A New Justice League.

Making my top 5 of the hardest things to deal with remains dealing with the folks who work for service agencies. Being patient, and “sliding” in rather than charging in are two skills I am not naturally blessed with. It’ll be a lifetime in the making before I manage either of these two abilities with any form of grace.

And yet, grace with the right amount of push is what you need to hone as a parent in the world of special needs services. It also happens to be what you need to hone as a human being looking to accomplish anything at all.

If we were talking about businesses, when there are options in the area for where our children can receive private services out of pocket then we could rage and shout and take our money elsewhere; it is after-all the market economy. However, in the public service sector which is supposed to deliver services to citizens who need it but is designed to fail and where, as it happens, most families find themselves, you need to be practically pathetically apologetic and overly thankful for each and every action.

I find that so tiring, so irritating and extremely annoying.

The well-raised, sympathetic, people-loving, people-pleasing part of me understands that more often than not, the women and men who work as service coordinators, intake workers, counsellors, case managers, and personal support workers have a genuine connection to the work they do and want only to improve the quality of life of the people who figure on their caseloads.

The mother in me, the one who discovered you can get over the fear of coming across as too aggressive and experiences Hulkian rage at the severity of dysfunction in the health system as it relates to children with special needs, will tell you that those of us who navigate the system for our children should be paid for all the coordinating, following up, consulting, tracking, pushing, and repeating, repeating, repeating that we will do well above and the beyond the “expected” parenting related work that is raising children.

So how, in the midst of the shit-storm that is a diagnosis and life with a child for whom you need to continuously arrange services, am I supposed to be able to speak sweetly when all I want to do is rip someone a new one for being another cog in the wheel rather than an ally our family can count on?

The answer is this: to the degree that you are able to remove the feelings you have about your child and life in general right now, do it. Speak as if you’re addressing a neutral object.

Sound crazy? It is. Near impossibly hard. But you’re a warrior….at the very least one in training, and you can handle this just like you are handling everything else.

What I wish social services employees understood is that it is very difficult for us parents to talk to them. We are at once at their mercy – needing their willingness to connect us and grant us the magic of services or shorter wait times; and equally needing to demonstrate that it is us who are the advocates, leads, and implementors of our children’s wellbeing.

It is me who knows my daughter better than anyone else. I see the nuances and I see the struggle. I see the hint of understanding in her eyes when she holds my gaze that moment longer and not even if set on fire would I look away.

But here I am, at the mercy of the policy maker, the service gate-keeper who decides whether or not we will be granted a visit and when that visit will be. Waiting and hoping that they will decide that an assessment of the severity of my daughter’s condition makes more sense than telling me that she can’t be placed on a waitlist.

The ridiculousness of the situation we are in right now is that children with needs not labelled Autism don’t have a scoring system as a determinant for what the most impactful therapies are and there is no mechanism designed to ensure that available funds go to the children who need it. Is it possible for all children to get everything they need? No, that’s utopic. And not because the money isn’t there, but because of how the system is set up; how governments taking turns playing house think the votes will swing.

Funding allocation for the special needs community inclusive of the needs of children, youth and adults needs to be wrestled out of the hands of any government and stand alone as an aspect of our Charter of Rights and Freedoms. A party-free committee comprised of equal representation of vetted and well-reputed professionals and parents not vying for funds for their child’s diagnosis as if we are on separate teams, but as invested individuals in the well-being of our societies bravest – and equally – most vulnerable. We could call it The Justice League…with permissions of course.

The hoop-jumping parents are required to do when we do so very much already; and experience more stress, strain, and struggle than most people will bear over a lifetime invariably end with “I know of a really good [fill in the blank], but it’s private.

A bad mood will spread over you and at first, you’ll just have a furrowed brow and then your blood begins to boil and finally you sprew “ What is this bullshit! These services should be provided for! We live in CANADA, one of the very best places in the world to live. I am at once proud to be a Canadian and hollowed out that my country doesn’t give a damn about my daughter.

This is a quality of life issue, damn it! Families can’t crawl out from under the burden of properly supporting their special needs children. For a long time, I believed that it is my task and my task alone to care for Téa; our job to pay for everything. Somehow, I started looking at anything the government did to cover a cost or therapy as a BIG GIFT from above.

Nonsense. It’s all nonsense.

If society pays for the medical care of a sick child, it must cover the therapeutic care of a child with a life-altering condition.

If you’ve made it to this line, I want to thank you for reading with your eyes and listening with your heart.

Ariana

 

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Blow it out

Sucking and blowing and all that jazz.  Sounds fun, right?

More than fun, it’s imperative. Life affirming behaviour that you will be grateful to do when you’re congested.  Of course the sucking and blowing I’m referring to involves saline solution, a squeeze bottle…uh…wait. Perhaps I need to be clearer here.

Blowing your nose and sucking up saline water – again all about the nose –  in order to clear your sinuses is what I’m talking about.

Because as if the sinus infection/flu wasn’t bad enough, if you’ve had a kid or more, you get the added bonus of most likely wetting your pants anytime you cough or sneeze.   If you are 8 months pregnant with a flu/sinus infection and you sneeze, cough or basically shift position you will as a matter of course wet your pants – don’t talk to me about kegels – and know that you’re the reason I am sharing my pearls of wisdom.

There are few things you can take that are safe during pregnancy. Everything here you can do/use, pay particular attention to point #6.

So here is how you can alleviate your painful flu/sinus symptoms and get better sooner:

[Do note that I am not a doctor or health care practitioner of any kind that any advice/suggestions/tips you read here are not intended to replace the care you are given by the doctor of your choosing. I’m just a mom following the advice of a plethora of other moms who’s evidence of success is purely anecdotal].

Okay, with that out of the way, are you ready?

1. When you START to feel like you are coming down with something, whip out your neti pot or nasal bottle irrigation system as I like to call it and start doing multiple “rinses” throughout the day. I don’t care where you are – at the office, in the car, do it! You will hate you for not doing it if you get sicker. Don’t know what a neti pot is?

This is a neti pot. The one above is the model I have. You can find any number of different styles and you can buy them at any pharmacy.  The idea is that the warm water is poured into one nostril and (eventually) drips out the other nostril. Want to see it in action?

Or, how about neti-ing as a group? Because you know, why would you want to drip snot out of your face in private?

2. If you irrigated yourself as per step one and still got sick, bummer.  Double or triple (as per my naturopath whom I adore and am still heart broken over her move to Chicago) your Vitamin C intake. No more than 3000 mg per day until your stool (that’s poop) is soft.

When it softens it indicates that you’ve had enough and cut it back down to 1000 mg daily until you’re better. Other supplements that boost your immune system are: zinc. And, Heel, a naturopathic medicine company makes three cold/flu/sinus remedies that’ll knock your socks off. You can learn more about them here, most health food or natural health centers worth their while carry the line. This was my arsenal for attacking this bout of flu/sinus grossness:

This is for flu/cold symptoms.                 This is for sinus/rhinitis etc.

3. Steam your face over a pot of hot water – do not burn yourself, that would just suck even more – to loosen the mucous stuck in your face. Blow your nose and wash your hands. In fact wash your hands or at least sanitize them every time you touch your face.

4. DO NOT consume Dairy. It aggravates your mucous membrane making it worse. No: milk, cream, yogurt, ice cream, cheese of any kind.

5. Take a lemon. Squeeze the juice into a glass and gargle with some of it. The rest of it, swallow (again, only swallow if you have not gargled with it, want to be clear here). If it’s too much for you to tolerate, add some warm water and honey to sweeten.

6. Moan and complain until friends and family bring you soup, pick up your kids and do laundry. If your husband is worth his salt, he’ll fill in the gaps and give you a much needed reprise so that you can recuperate. My husband is not available for sharing. He’s mine, allllll mine.  Ask someone else.

Feel well,

A.